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Duchenne UK news

Why Krishnan Guru-Murthy is presenting the BBC Radio 4 appeal for Duchenne UK – by Emily Reuben

“Today my dear friend Krishnan Guru Murthy is presenting the BBC Radio 4 Appeal for Duchenne UK.   

We first met when I was a rookie reporter at Channel 4 news, and he was the big shot presenter. We ended up working closely on the News at Noon – and became friends.   

Then his son Jay was born, and my son Eli. And then Eli was diagnosed with Duchenne muscular dystrophy (DMD). And Krishnan went into overdrive.   

He agreed straight away to become a patron for our new charity and decided to raise some serious money. He walked off the street into the oldest bike shop in the world, Pearson’s in Sheen, and bought his first road bike and the kit. He convinced 25 cyclists to do the 300KM cycle from London to Paris – in 24 hours – with him and his team from Channel 4. And together they raised £250,000 for what has now become our biggest annual fundraiser, the Duchenne Dash.   

They say that in a crisis you really know who your friends are. Well, Krishnan has gone above and beyond for Duchenne UK and I am just as touched today by his passion and dedication as I was all those years ago, as he leads the BBC Radio 4 Appeal to raise awareness of our work.  

When Eli was diagnosed, my reaction was driven by my instincts as a woman and as a mother. To fight. With every cell in my body. To rage against the grief, the desperation, the powerlessness, the bitter and searing pain of that diagnosis. So we set up the Duchenne Children’s Trust, which has since joined with Joining Jack to become Duchenne UK.   

Between us, in 10 years, we have invested more than £9 million in research and we are working to change this the DMD treatment landscape beyond recognition. 

The aim of our charity is clear: we fund potential treatments that will help THIS generation of people living with DMD. We want our money to have an impact along every stage of the drug development process – one that we know is complex and challenging.    

So, we have an innovative approach to funding. Not only do we fund basic research, but we fund the doctors and nurses needed to deliver clinical trials in the UK. And we aim to accelerate research and work with the pharmaceutical industry and regulators to get new treatments approved. We bring funding, collaboration, drive and new ideas to the areas that need it.    

The final piece of the puzzle is the reimbursement of new drugs. And again, here we are breaking new ground through the innovative Project HERCULES. We’ve brought competing pharmaceutical companies together to create shared data on their treatments, making it easier for regulatory bodies like NICE (The National Institute for Health and Care Excellence) to make decisions about paying for them.   

We hoped for three companies to sign up – we now have ten. The story has made headlines around the world.   

In just 10 years, we’ve grown from a tiny patient organisation to a multi-million-pound catalyser and funder of research bringing treatments and hope to this generation.    

As Maya Angelou said: “I can be changed by what happens to me. But I refuse to be reduced by it.”    

This disease stole from us some of the luxuries of choice – But it couldn’t steal our hope. It couldn’t – and it won’t – steal our fight.  

We hope that listening to Krishnan today will inspire you to join us and be part of the end of Duchenne.”    

Listen to the BBC Radio 4 Appeal on 26th June at 7:55 or 21:25 or listen again at 30th June at 15:25  

Find out more on the Duchenne UK BBC Radio 4 Appeal webpage.

Donate online or by calling 0800 404 8144. You can also send a cheque, made payable to Duchenne UK, to Freepost, BBC Radio 4 Appeal (write Duchenne UK on the back of the envelope).  

Published on 26 June 2022

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Categories Duchenne UK news Personal stories